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9 year old son is struggling in school, after 4 years we still have no diagnoses

NAS79549

My son was first flagged up in nursery, he developed obsessions and found social situations very difficult. 
someone came and assessed him in class, they said do this etc and keep watching him. 
then in year 2 he started needing more support, so the assessment team referred us to the nhs. 
they contacted us about 6 months later, we went for an assessment where the lady showed him flash cards of social situations and facial expressions etc. it flagged up more issues he may have. They then went on to refer him to the hospital consultant. 
nearly a year later he contacted us with a date to come in and see him, then typically, the pandemic hit! So we were left with a telephone assessment. At the end of the assessment the dr said he needs more support at school, he’ll contact them, and we’ll have another assessment in 6 months time to see how he’s getting on- Also supposedly referred us to the sleep clinic, but that’s never come about. 
six months came and went, and we had a letter saying the consultant has left the hospital and we would be appointed a new one. Fast forward to the present day- more then a year later and nothing. 
I recently begged the school to do something but, they just passed me a number and said ring this. 
I got through to the reception who said sorry we’ve had a massive back log I’ll flag him as priority and that was 3 months ago. What am I suppose to do!? Do I chase them up? Do I wait? Can I contact someone else? I’ve tried ringing cahms but they weren’t interested unless he was referred by someone. 
My son is now 9, he’s biting on the skin of his hands while he buzzes now which has caused skin damage (sensory chew toys don’t help), the school keep saying his handwriting is very poor and his maths is dire but, I know all this! I’ve tried helping him at home but he simply doesn’t want to engage with those two topics. He’s very advanced with his English side of things, but I just want him to have the support for the parts he’s struggling with. 
I tried a maths tuition after school, but for the most part- all they did was hand out paper to fill in, the teaching was barely there and when it was, it wasn’t one to one. 
I try to find a private 1x1 tutor for him but, as soon as I mention the word autism they seem fully booked up. 
Is there anyone that can help me- point me in the flight direction or give me some advice!  

  • in reply to Kate Kestrel

    Thank you so much. I’ll be trying to book an appointment with the drs today! 

  • Hi - I’m sorry you’re experiencing this - it sounds very stressful. The services are very poor and the pandemic has only made things worse. Years ago we were referred to Camhs with our son in order to investigate the possibility of Autism and we experienced a similarly poor and slow response from Camhs with very little progress over repeated appointments with them.. I contacted the National Autistic Society helpline and they suggested I go back to my GP and express my concerns. The GP was very understanding and referred me to a different part of the NHS (i think it was called ‘community healthcare’ and through that referral we saw a consultant at a local hospital and she diagnosed my son with Autism fairly quickly (as I remember we just had 2 appointments with her). So my advice would be to go back to your GP and express your concerns, and mention any new issues - such as the biting and skin damage. I think this is something that needs swift attention as your grandson is unintentionally harming himself. Hopefully this will prompt the GP to realise the importance of getting him help ASAP.  Good luck.